A roller coaster of a day...

First, I wanted to post some additional pictures of yesterday...

I am referencing this post "today" as in Sunday even though it is technically Monday (12:15am). To not keep everyone on their toes, I will begin by saying...ANOTHER DAY WITH NO SEIZURES. I'm loving this one day at a time approach. And I'm really loving the new things I get to count!!! And I'm REALLY loving the things I no longer have to count!!!

Today has been quite different than yesterday. Dr. Chugani's chief resident came in to talk with us this morning. He warned us that Day 3 post-op would be the worst. They are always right. She would be the most lethargic today, which is good, because it means the brain is healing...it has to bottom out before it gets better. She is more swollen today than yesterday...barely able to open her right eye. Even though we still had some milestone moments today, today was emotionally draining. For most of the day, Sophie was very lethargic. Not wanting to speak. Not wanting to sit up. She was limp. Almost lifeless. Every once in awhile she would peek at us with her left eye.

They took her wrap off today. If you want to see close up pictures, you can go to my other blog page. They also took out her JP drain. It was a bit painful. She was due for pain medication and usually they warn the nurse a half hour before but they didn't. She was brave though and it was fairly quick. She immediately got a dose of tylenol with codeine and feel asleep.

Later this afternoon, I felt brave enough to hold her. It was an emotional moment on many levels. It felt so good to have her in my arms but she wasn't there. Her body was so heavy. It was hard to hold her. She still has an IV in her right arm, drain from her head and pulse ox on her big toe...so just the logistics of juggling that was hard enough without the fear of worrying about the stitches in her head. It was so unnatural. She has absolutely no head control. Her body was limp. She looked uncomfortable. I am sure she felt uncomfortable. Her safe haven was no longer her safe haven. Our snuggle time was over within minutes when she projectile vomited all over the two of us.

I didn't think she would be like this. I wasn't expecting her to lose all her tone and not be able to sit up. I think she only said one word today...juice. I can't remember her saying anything else.

She did have a big moment late this evening. As I was comforting her, she grabbed my hair with her left hand and slowly put her right thumb in her mouth. It was a moment. I cried. I never thought I would cry seeing my baby girl suck her thumb. But then her monitor starting beeping. The IV in the crook of her right arm was being crimped. So that was the end of that. I pleaded with the anesthesiologist not to put anything in that arm. He understood...he had a 6 year old that still sucked her thumb. But with just having surgery a few days before and the need to start new IVs (for both surgeries, she had 2 IVs in and one arterial line), they had to go there. I even saw where they tried to stick her in other places but I guess those veins just wouldn't hold.

She vomited once more this evening. She has been able to drink some juice throughout the day. She was on an as needed dose of Reglan and Zofran but she is now getting that on a regular basis.

Her current meds are as follows (all in IV form except tylenol with codeine): 75mg of Depakote every 6 hours, 40mg of Dilantin every 12 hours, 1.5mg of Zofran every 8 hours, 1.5mg of Reglan every 6 hours, an antibiotic every 8 hours and 24mg of Tylenol with codeine every 4 hours on an as needed basis. She had to get a bolus of Depakote and Dilantin this afternoon because her levels were not high enough.

Well, it's 2am and I really need to get some sleep. It has taken me forever to write this post...blood draws, diaper changes, itchies to deal with, etc. She is sleeping peacefully now and just a few minutes ago she said "mom"!!!